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Friday, December 30, 2011

What a year! We published 189 posts from 114 authors, many new to Thinking Person's Guide to Autism. The complete list is below the fold.

We branched out. I started to categorize the blog posts using the section headings from the book, and realized a lot of the posts didn't exactly fit. We published a lot more posts by autistics, and more on adult issues in autism. Advocacy wasn't a heading in the book, but was a big subject this year, and into the future. Technology and research were also covered with more posts than in previous years.

In 2011, our Facebook page (www.facebook.com/thinkingpersonsguidetoautism) developed a lively community of its own. We use it not just to publicize posts here, also but to put up short articles and links of interest to the community.

There were two big events here: One was the Self-Advocate/Parent Dialogues, which began on September 19 and ran until September 30. About these conversations, TPGA editor, self-advocate, and autism parent Carol Greenburg wrote:

The thing about conflict resolution is that it requires conflict, which is messy, no matter how sensitively it's handled. Just because it's inevitable doesn't mean it's not annoying. In fact, in my experience, speaking as an individual unable to fully represent any community of any kind, the more annoying the task, the more important it is.

This has been, and will continue to be, an imperfect process. It will continue to be hard work. It will also require a lot of tolerance for the mess and the imperfection, and eyes on the larger prizes of dialogue and constructive conversations.

Wednesday, December 28, 2011

I have been a professional comedian for 30 years. My resume includes appearances on the Tonight Show, Cheers, Late Night with Conan O’Brien, an ABC sitcom and appearances as an opening act for such diverse performers as Tony Bennett and Warren Zevon.

However, my most important role is that of a father to an autistic child.

In addition to the aforementioned credits, I have also written four one-man plays. The latest is entitled “A Different Kind Of Cool” and chronicles the relationship I have with my son Liam.

While I have been lucky enough to have all of my plays receive positive reviews, ADKOC has garnered the most attention of anything I’ve written or performed. I’ve heard from people all across the country as well as Australia, Sweden, and Finland. To say it has hit a nerve with people who has seen or heard of it is an understatement.

The interesting thing is the play almost didn’t happen.

A little backstory. I am lucky enough to live in Sacramento, the home of a fantastic new works theatre, The B Street Theatre. For the past fifteen years or so, I have been associated with these folks. Every three years or so they contact me and ask if I have anything in mind that might work for their space.

In the past, I have written plays about being a new dad (Letters To Declan), trying my luck in Hollywood (Just The Guy) and losing my parents (What He Left). All of these pieces are personal and revealing.

While I was anxious to write another play after the theatre contacted me, I was at a loss as to what the topic might be. In fact, the only idea I had was to write about the Boston Red Sox finally winning the
World Series in 2004 after 86 years. I am an avid fan.

It was my wife who suggested I write about Liam.

While he had been diagnosed with PDD-NOS as a second grader, his challenges were never something we spoke about publicly. We are a very private family.

However, my wife thought it was time that people knew our story. She thought that families with kids on the spectrum could relate to my struggles with Liam and that people who thought they understood autism might learn a little something.

Like most parents of an autistic child, the period when Liam was diagnosed was a confusing and emotional period.

Where do we go for help? To whom do we talk? Is there a cure?

While we searched for answers to these questions, I thought the first thing we needed to do was work harder. I thought Liam could apply himself more and we could “fix” whatever was wrong.

I wanted him to be like the other kids and not some uncool outcast.

As a former teacher I knew that different learning techniques worked for different kids.

We discovered early on that Liam was a visual learner, so I started working in that direction. I made chart and graphs and flash cards. While he was in the fifth grade I completely rewrote his entire math book to include more pictures and charts.

And while Liam continued to do well (with the help of an aide) in a mainstream classroom, I noticed our relationship was suffering. Homework time was dreaded by both of us. I would push him harder and harder. There were tears and yelling and a general feeling of frustration on both our parts.

After one particularly awful session, I realized this wasn’t working, I decided to step back. I just couldn’t do it anymore.

When I did that, I noticed, once again, the things at which Liam excelled. Unconventional things in terms of schoolwork but interesting nonetheless.

He has an amazing imagination. Loves video games. Can quote entire books of Calvin and Hobbes comic strips. He wrote and submitted a Simpsons script at age ten and ultimately received his first rejection letter!

While homework and school are still important, what I found to be even more important is to let Liam be who he is. To not try and turn him into every other boring person I know. To let that energy and creativity seek its own level.

Is it hard to do? You bet. But the results are so much more pleasant and positive. And he is still doing well in school. Without an aide!

We are letting Liam be Liam.

So what if there are quirks? So what if he isn’t just like everyone else. He’s better than everyone else because he’s the one and only Liam.

And I realized that there was no need for a fix, because there is nothing wrong with him.

Loud Hands: Autistic People, Speaking features essays, long and short, by Autistic authors writing on autism acceptance, neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands). Questions posed to the contributors might include what does autism mean to you; why does Autistic culture matter; what do you wish you had known growing up Autistic; how can the Autistic community cultivate resilience; what does “loud hands” mean to you; and how do you have loud hands? The anthology is the first of a projected series featuring contributions from Autistic writers stressing the preservation and celebration of Autistic culture and resilience. The website will host shorter and multi-media submissions along the same lines, along with additional materials and videos, and serve as a focal point for the project and community.

Our Impact:

The Loud Hands Project is about survival, resilience, and pride. The Loud Hands Project is necessary because autistic youth face systematic oppression, abuse, and bullying every day. It does not “get better” for us -- typically, upon graduation, it actually gets worse. This must change.

The Loud Hands Project is a structured, multi-faceted response by the Autistic community to the systematic disenfranchisement, bullying, and abuse experienced by autistic youth, young adults, and self advocates. Taking the form of a publishing effort by the Autistic Self Advocacy Network and spearheaded by Julia Bascom, The Loud Hands Project consists of multiple prongs organized around the theme of what the Autistic community refers to as “having loud hands” -- autism acceptance, neurodiversity, Autistic pride, community, and culture, disability rights and resistance, and resilience. We focus on cultivating resilience among autistic young people and empowering us in building communities and cultures of ability, resistance, and worth. To quote Laura Hershey: “you weren’t the one who made you ashamed, but you are the one who can make you proud.”

How You Can Help:

We need to raise ten thousand dollars ($10,000) to help cover the initial costs of putting together and distributing our first anthology and launching our website. Please consider making a donation -- every little bit helps!

Covering a wide range of nuts-and-bolts subjects — from strategizing
toilet training and and planning fun family outings, to helping your kid
cope with bullying, to identifying the issues that a skilled
speech-language therapist can work on with your child, to spotting and
avoiding “autism cults,” to navigating byzantine special-needs
bureaucracies and providing your child with appropriate assistive
technology, to fighting for your kid’s right to an individualized
education — the Thinking Person’s Guide to Autism is bracingly free of dogma, heavy-handed agendas, and pseudoscientific woo. What distinguishes it from, say, the fine guide for parents recently made freely downloadable
by the National Autism Center, is the heart, soul, fierce intelligence,
and subversive wit of the authors and editors, which shines on every
page. Offering observations from parents, professionals, and autistics
themselves, the book is a welcome dose of optimism and uncommonly good
sense.

Thinking Person’s Guide to Autism (TPGA) is the
resource we wish we’d had when autism first became part of our lives: a
one-stop source for carefully curated, evidence-based information from
autistics, autism parents, and autism professionals

Having read the first two chapters I agree with the statement above.
It is a resource I wish I had when my kid was diagnosed. Sure, I’d
have loved to have read this book before and been better prepared.

We hear that one of our favorite websites, the Thinking Person's Guide to Autism, has a new book out today, a collection of pieces by their thoughtful and emotionally astute writers. You can buy it here, and they say the Kindle edition will be available soon.
It's a good excuse to try to describe what's so valuable about the
voices collected on TPGA.

I think it's the power of personal experience
combined with hard-headedness about information. It's the combination
of warmth and realism: you feel the love the writers have for their kids
(and other people's kids) even while (or exactly while) they are
telling the truth about how difficult it is be to be a parent to those
kids, and how imperfect we all are at it.

One of the best sites on the web for information about autism from
parents, professionals, and autistic people themselves, the editors at Thinking Person's Guide to Autism have just published their first book featuring contributors (including the author of this column) offering many points of view.

We appreciate all the kind words, and for their role in getting our book noticed (it's been selling like hotcakes). We hope you'll be motivated to get a copy of the book for yourself, or for someone who could really use solid advice about autism!

Monday, December 19, 2011

It has been an amazing year and a half since we began this adventure. We're so pleased that the great work of our contributors is now available to any person searching for reliable, experienced, positive information about autism.

For all today's smiles and pride, the truth is Thinking Person's Guide to Autism's inspiration was our persistent frustration with the negative autism stereotypes and misinformation we faced in parenting our children with autism, or advocating with/amplifying the signal of the amazing Autistic communities. As stated in our Mission, this book is the resource we wish we'd had when autism first became part of our
lives: a one-stop source for carefully curated, evidence-based
information from autism parents, autistics, and autism professionals.

We want to thank all of the amazing contributors to this website, and those authors in the first book (listed below); you are a wealth of knowledge. And of course, our work would not be complete without the dedication of our fantastic editors: Shannon Des Roches Rosa, our Executive Editor, devotes her time, experience, and tenacity to creating and guiding this group of works, and coaxes the best out of each of us. Liz Ditz uses her social media superpowers to recruit many strong skeptic and neurodiversity voices to our website and book. Emily Willingham, our science editor, consistently delivers her trademark literate compassion, whether writing about parenting or science. And there's Carol Greenburg with her tension-breaking wit, her empathy and wisdom, and her pragmatic voice colored by her experience as a professional advocate, parent, and a self-advocate. [And Jennifer Byde Myers, without whose gorgeous writing, alchemy skills, and publishing experience this website and book could not have existed -SR.]

Together we constantly strive to provide the best information we can find to people new to autism -- or new to positive, evidence-based approaches; provide insight to the professionals who serve our communities; and offer a well-lit path to individuals or families looking for a resource to help determine what "autism" will mean for them.

Thank you to our friends, our families, and the wonderful Thinking Person's Guide to Autism community for making this book possible. Today is a good day.

Friday, December 16, 2011

Deanne is the mother of gorgeous twin boys, five years old, who are both on the autism spectrum.

I’ve read a number of blog posts where the writer describes the ways that strangers or relatives make them feel their parenting skills are inadequate. This post will not be adding to that number. It is about a struggle I’ve had in dealing with some challenging behaviours from Oliver. My reactions to those behaviours led me to conclude (at least initially) that I wasn’t being the best mother I could be.

Oliver had been displaying some pretty aggressive behaviour towards Owen: pushing him hard enough so that he would fall over, kicking him (usually once Owen was on the floor) and pulling his hair. The worst incident happened when Oliver pushed Owen off a chair and Owen fell on his head. It got to the stage that Owen would cower every time his brother came close.

Of all the challenges I’ve so far faced as a mother, this was the first that left me feeling … powerless, bereft and, to be completely honest, angry. Owen is the sweetest little guy and it hurt like nothing I’d ever experienced before to see Oliver behave that way towards him. (Don’t get me wrong, I know my Owen isn’t perfect; he can be incredibly stubborn -- and passive aggressive! -- at times.) But then there was also the fact that Oliver’s behaviour was so out of character -- he’s normally very affectionate and caring. Seeing one of my babies hurting another one of my babies was very painful. Then there was the reaction of the boys’ father and grandmother. It took a lot out of me frankly, having to constantly explain that Oliver wasn’t being ‘naughty’ or ‘bad’ and that the right response wasn’t to shout at him about what he was doing and that he didn’t need to be disciplined or punished.

Then one day it happened; I cracked. I came out of the bathroom and Oliver was pulling Owen’s hair and kicking him. I shouted at Oliver to stop but then I found myself yelling, “Why? Why are you doing this to Owen? I don’t understand!” I was holding Owen and crying and then the look on Oliver’s face made me cry more. I’d hurt him. I held both of them and cried. I knew I couldn’t handle this behaviour effectively any longer and to avoid getting upset with Oliver again I started putting him into time out. Not because I thought this was the best strategy but because at least it prevented me from shouting at him and worsening the situation further. Nonetheless, I felt like I had failed him.

Oliver has had recurring bouts of aggression which I had dealt with in the past using planned ignoring. I didn’t feel that this was effective in dealing with this latest phase however, especially as the behaviour wasn’t being ignored by others, i.e., his caregiver, his father, and his grandmother. I hated putting Oliver in time out but until I could speak to his supervising therapist and we could figure out a better approach I needed to be able to calm myself down when these episodes occurred. I confided in a good friend who is also an ASD parent about what was happening and their response was that they’d never used time outs but that their ex did. Given my friend’s opinion of their ex, this was less than a ringing endorsement of my strategy! I officially diagnosed myself as a bad parent.

I compiled some data on the behaviour and finally got a chance to speak to Oliver’s supervising therapist about strategies. I told her that I really needed her to be very specific and detailed with me. If she was going to recommend that I ignore the behaviour then I needed to know exactly what that would look like -- how I could ignore Oliver while interceding to make sure Owen was safe at the same time. We came up with the following:

I would work on timed, specific, positive reinforcement with Oliver. I was separating the boys to avoid incidents but she wanted me to actively work on putting them together as much as possible – to sit them together during meals and on public transit, to get them to walk together instead of me being in the middle of them and so on. During those times I would tell Oliver how happy I was with how he was interacting with Owen. I would make sure I did this at least ten times a day.
In terms of how to react when he was aggressive I was not to say anything at all to Oliver, not to make eye contact with him and not to touch him if possible. Ideally I would put myself between the two boys with my back to Oliver and that would be sufficient but if I had to, I could grab his brother and Owen and I would go into “time out.”
Whether it was these strategies or if the behaviour simply waned on its own I’m not completely sure, but Oliver’s displays of aggression towards Owen have reduced dramatically. The behaviour had spiked when there were a number of changes to the boys’ routine and so it may have been simply a reaction to that -- Oliver can be very rigid.

So where did that leave me in terms of my feelings that I’d failed him as a parent? I realized what really ate away at me was not being able to understand Oliver. I knew he wasn’t being naughty but it was so tough to explain to others exactly what he was doing. If I couldn’t explain it to others that meant I probably didn’t understand it either and I needed to understand my son before I could start to feel better about myself.

From the data I’d been collating I knew the behaviour was mostly in reaction to not liking the things he was hearing. For example, if he was told to wait and he didn’t want to or if he requested an activity that wasn’t available to him at that point he would immediately turn on his brother. Clearly frustration at his lack of control over circumstances was at play here so I had to be better prepared if I was going to give him “bad news.” If something that he wanted wasn’t available then I had to offer him a choice of things he liked that he could have. Good old redirection! But this was a strategy to prevent a reaction, it didn’t get me any closer to understanding his behavioural choices. Why was aggression towards Owen his reaction to feeling frustrated?

I started thinking about Oliver’s life in general. As I mentioned previously, he can be inflexible, rigid and along with that goes some anxiety. He holds it together all day while he’s in IBI (Intensive Behavioural Intervention) and so it’s understandable that sometimes he would lose it at home. I’ve looked into some ways that could help him manage his tension and I’m going to try progressive muscle relaxation and breathing exercises with him. These are after all good ways of coping with stress regardless, so there’s no downside to him learning these skills. Again though, this is another strategy -- helping him learn ways to self-regulate. It still doesn’t explain why he was currently dealing with his anxiety and tension by being aggressive towards his brother instead of (say) throwing himself on the floor screaming -- an alternate strategy he has deployed in the past.

I knew Oliver didn’t resent or dislike Owen. He will often talk about how cute Owen is. He’ll stroke Owen’s hair and tell me that it’s really soft. He cuddles his brother a lot and if Owen gets upset he’ll say “Owen’s sad.” Oliver is actually a good reader of his brother -- when Owen is crying because he’s angry rather than hurting or upset, Oliver will say “Owen’s fussy!” (I have to say, it’s pretty cute!) So again I came back to the question -- why is he beating the crap out of his brother?!

Just so we’re clear, I wasn’t reinforcing the behaviour by “giving in” -- Oliver was not getting the things he wanted out of this. However, I understood what his therapist was saying -- that the attention Oliver got as a result of the behaviour (me running over, telling him No, putting him in time out, etc.) had a reinforcing rather than a deterring effect. But this still didn’t explain to me why he was choosing that particular behaviour, especially given the fact that it did absolutely nothing to ease his frustration. Again and again I went over the same ground -- I knew he didn’t like hurting his brother so why was he doing it?

The scales finally fell off my eyes as I was reading an article on behaviour. The writer was discussing “extinction bursts.” This is what can occur when you start implementing measures designed to extinguish a particular behaviour and in response the behaviour suddenly and dramatically starts to increase. Wikipedia’s example of an extinction burst is as follows:

“Take, as an example, a pigeon that has been reinforced to peck an electronic button. During its training history, every time the pigeon pecked the button, it will have received a small amount of bird seed as a reinforcer. So, whenever the bird is hungry, it will peck the button to receive food. However, if the button were to be turned off, the hungry pigeon will first try pecking the button just as it has in the past. When no food is forthcoming, the bird will likely try again … and again, and again. After a period of frantic activity, in which their pecking behavior yields no result, the pigeon’s pecking will decrease in frequency.”

In explaining extinction bursts the writer of the article I was reading used an example that most adults will have some familiarity with -- what can happen when another person ends a relationship and we are not ready to accept this. Typical reactions are crying, negotiating, getting angry (sounds a lot like our kids, right?). For a period of time these behaviours may worsen and we find ourselves continually thinking about and attempting to contact the person we still desperately want to be with. Some individuals will go to the extreme of threatening to harm or even actually harming themselves.

I thought of how intense the pain is when a relationship ends and it suddenly occurred to me -- what if Oliver feels pain that deeply when he doesn’t know how to handle a situation? As adults, what do we often do when we hurt so badly that we don’t know how to deal with the pain effectively? Well, we sometimes lash out at the people we love the most. We know it’s not right but we also know that its effective because those people love us and somehow this will result in us getting some help. We’re hurting but we don’t have the words to explain it -- we just want someone to make it better.

I don’t know if this is how Oliver feels but it makes sense to me. Thinking of it in this way has helped me understand what could be going on inside my beautiful boy’s head. If “behaviour is communication” then this behaviour helped me understand what Oliver was trying to tell me. I did (and still do) feel badly about shouting at him and putting him in time out but a lot of positive things have come out of that heartbreaking period. I’ve discovered some strategies that seem to be working and that feel effective. I’ve got some ideas for more things I can do to help Oliver self-regulate. Most importantly I feel like I understand Oliver again.

Wednesday, December 14, 2011

Pseudoscience is the shaky foundation of practices -- often medically related -- that lack a basis in evidence. It's "fake" science dressed up, sometimes quite carefully, to look like the real thing. If you're alive, you've encountered it, whether it was the guy at the mall trying to sell you Power Balance bracelets, the shampoo commercial promising you that "amino acids" will make your hair shiny, or the peddlers of "natural remedies" or fad diet plans, who in a classic expansion of a basic tenet of advertising, make you think you have a problem so they can sell you something to solve it.

Pseudosciences are usually pretty easily identified by their emphasis on confirmation over refutation, on physically impossible claims, and on terms charged with emotion or false "sciencey-ness," which is kind of like "truthiness" minus Stephen Colbert. Sometimes, what peddlers of pseudoscience say may have a kernel of real truth that makes it seem plausible. But even that kernel is typically at most a half truth, and often, it's that other half they're leaving out that makes what they're selling pointless and ineffectual.

If we could hand out cheat sheets for people of sound mind to use when considering a product, book, therapy, or remedy, the following would constitute the top-10 questions you should always ask yourself -- and answer -- before shelling out the benjamins for anything, whether it's anti-aging cream, a diet fad program, books purporting to tell you secrets your doctor won't, or jewelry items containing magnets:

1. What is the source? Is the person or entity making the claims someone with genuine expertise in what they're claiming? Are they hawking on behalf of someone else? Are they part of a distributed marketing scam? Do they use, for example, a Website or magazine or newspaper ad that's made to look sciencey or newsy when it's really one giant advertisement meant to make you think it's journalism?

2. What is the agenda? You must know this to consider any information in context. In a scientific paper, look at the funding sources. If you're reading a non-scientific anything, remain extremely skeptical. What does the person or entity making the claim get out of it? Does it look like they're telling you you have something wrong with you that you didn't even realize existed...and then offering to sell you something to fix it? I'm reminded of the douche solution commercials of my youth in which a young woman confides in her mother that sometimes, she "just doesn't feel fresh." Suddenly, millions of women watching that commercial were mentally analyzing their level of freshness "down there" and pondering whether or not to purchase Summer's Eve.

3. What kind of language does it use? Does it use emotion words or a lot of exclamation points or language that sounds highly technical (amino acids! enzymes! nucleic acids!) or jargon-y but that is really meaningless in the therapeutic or scientific sense? If you're not sure, take a term and google it, or ask a scientist -- like one of the folks at Double X Science(seriously--feel free to ask). Sometimes, an amino acid is just an amino acid. Be on the lookout for sciencey-ness. As Albert Einstein once pointed out, if you can't explain something simply, you don't understand it well. If peddlers feel that they have to toss in a bunch of jargony science terms to make you think they're the real thing, they probably don't know what they're talking about, either.

4. Does it involve testimonials? If all the person or entity making the claims has to offer is testimonials without any real evidence of effectiveness or need, be very, very suspicious. Anyone -- anyone -- can write a testimonial and put it on a Website. Example: "I felt that I knew nothing about autism until Thinking Person's Guide to Autism came along! Now, my brain is packed with autism facts, and I'm earning my PhD in neuroscience this year! If they could do it for me, Thinking Person's Guide to can do it for you, too! THANKS, THINKING PERSON'S GUIDE TO AUTISM! --xoxo, Julie C., North Carolina"

5. Are there claims of exclusivity? People have been practicing science and medicine for thousands of years. Millions of people are currently doing it. Typically, new findings arise out of existing knowledge and involve the contributions of many, many people. It's quite rare -- in fact, I can't think of an example -- that a new therapy or intervention is something completely novel without a solid existing scientific background to explain how it works, or that only one person figures it out. Also, watch for words like "proprietary" and "secret." These terms signal that the intervention on offer has likely not been exposed to the light of scientific critique.

6. Is there mention of a conspiracy of any kind? Claims such as, "Doctors don't want you to know" or "the government has been hiding this information for years," are extremely dubious. Why wouldn't the millions of doctors in the world want you to know about something that might improve your health? Doctors aren't a monolithic entity in an enormous white coat making collective decisions about you any more than the government is some detached nonliving institution making robotic collective decisions. They're all individuals, and in general, they do want you to know.

7. Does the claim involve multiple unassociated disorders? Does it involve assertions of widespread damage to many body systems (in the case of things like vaccines) or assertions of widespread therapeutic benefit to many body systems or a spectrum of unrelated disorders? Claims, for example, that a specific intervention will cure cancer, allergies, ADHD, and autism (and I amnot making that up) are frankly irrational.

8. Is there a money trail? The least likely candidates to benefit from conclusions about any health issue or intervention are the researchers in the trenches working on the underpinnings of disease (genes, environmental triggers, etc.), doing the basic science. The likeliest candidates to benefit are those who (1) have something patentable on their hands; (2) market "cures" or "therapies"; (3) write books or give paid talks or "consult"; or (4) work as "consultants" who "cure." That's not to say that people who benefit fiscally from research or drug development aren't trustworthy. Should they do it for free? No. But it's always, always important to follow the money.

9. Were real scientific processes involved? Evidence-based interventions generally go through many steps of a scientific process before they come into common use. Going through these steps includes performing basic research using tests in cells and in animals, clinical research with patients/volunteers in several heavily regulated phases, peer-review at each step of the way, and a trail of published research papers. Is there evidence that the product or intervention on offer has been tested scientifically, with results published in scientific journals? Or is it just sciencey-ness espoused by people without benefit of expert review of any kind?

10. Is there expertise? Finally, no matter how much you dislike "experts" or disbelieve the "establishment," the fact remains that people who have an MD or a science PhD or both after their names have gone to school for 24 years or longer, receiving an in-depth, daily, hourly education in the issues they're discussing. It they're specialists in their fields, tack on about five more years. If they're researchers in their fields, tack on more. They're not universally blind or stupid or venal or uncaring or in it for the money; in fact, many of them are exactly the opposite. If they're doing research, usually they're not Rockefellers. Note that having "PhD" or even "MD" after a name or "Dr" before it doesn't automatically mean that the degree or the honorific relates to expertise in the subject at hand. I have a PhD in biology. If I wrote a book about chemical engineering and slapped the term PhD on there, that still doesn't make me an expert in chemical engineering.

There is nothing wrong with healthy skepticism, but there is also nothing wrong in acknowledging that a little knowledge can be a very dangerous thing, that there are really people out there whose in-depth educations and experience better qualify them to address certain issues. However, caveat emptor, as always. Given that even MDs and PhDs can be disposed to acquisitiveness just like those snake-oil salesmen, never forget to look for the money. Always, always follow the money.

Here is a handy short version, too!

ETA: I've also blogged about pseudoscience before here and here; the latter formed the basis for this post. There's also a much longer and very good primer on what the signs of a pseudoscience are here; it's now 10 years old, but it's all still applicable, which just goes to show that some things don't change.

Monday, December 12, 2011

Our family's holiday traditions include: nightly panic over conjuring surprises for the 24 tiny drawers in my kids' advent box, sending holiday postcards weeks after Christmas to a random one-third of the folks we love -- and answering queries from family and friends about holiday gifts for Leo, our eleven-year-old son with autism.
I am quietly freaking out over those first two, but thoughtful questions about appropriate gifts for Leo -- I appreciate those, so much.

While finding presents that appeal to my son can be tricky, I've become a pro at it and make suggestions with confidence. Here's my advice for parents, grandparents, aunties, caregivers, godparents or friends looking for that perfect gift for kids with special needs.

Don't get derailed by age ranges on toy labels, because they don't always apply. One of Leo's all-time favorite toys is a Flip Flop Egg Drop sorting tower that also instantly distracts all visiting adults -- yet the box says it's for 18-month-olds.

Try to focus on the child's interests, on what they actually like to do -- this is where interrogating the kid's parents comes in. Leo's auntie know he enjoys winding up things, so she gifted him an emergency flashlight with a crank handle, and he's in heaven. My boy also adores music, but he's better at humming than singing -- so I got him a bag of plastic kazoos. Now he always has a kazoo on hand, and I don't have to worry if one gets broken or lost. He likes to color, but get gets frustrated because his fine-motor skills make staying in the lines difficult -- so we got him dot stamp painters, and the walls of his room are now festooned with colorful creations that make him proud.

With these guidelines in mind, here are some specific gift suggestions:

Unfortunately, special needs-specific gear can be expensive, e.g., Leo's path cost $200 and was a gift from a generous relative. But you can find equivalents to special needs and therapeutic toys in unexpected places. One of Leo's occupational therapists rarely pays full price for her balance, strength-building, and sensory gear, because she can usually find what she needs in the pilates and yoga sections at overstock outlets like TJ Maxx and Ross. And the best therapy balance ball I've ever found Leo was a $21 "Stability Ball" from Target rather than the same-size $79 version from a specialty company.

You can also make toys and gear. Leo is a fan of sensory bins, which are containers filled with dried rice, beans, or other materials that Leo can plunge his hands into, spend time pouring or fiddling with, or in which we can hide small toys for him to find. And instead of buying Leo pre-made weighted pillows or vests -- the latter being particularly problematic since he grows so fast -- we get cheap pillows, and vests with pockets, filled them with (again) dried rice or beans, and sew the pillow and pockets shut. If you've got handy on tap, you can also make home versions of swings, balance beams, etc. -- don't be afraid to harness your inner MacGyver.

Audio books are one of my favorite gifts for Leo and his friends, as listening to them is something our families can while spending all that time driving between home, school, and therapy appointments. I also love audio books for Leo because they are one way to apply the Least Dangerous Assumption, and give him the benefit of the doubt. They let him listen to stories without the pressure of having to "listen to Mommy" or process pictures or video in addition to sound. And -- bonus -- he can listen to favorite stories like Dr. Seuss and The Very Hungry Caterpillar, over and over and over again, and can even control playback himself if the stories are on his iPad, iPod touch, or other iDevice/player.

Leo and his sisters have always liked small laceboards, Wiki Stix, crayons markers, retractable tape measures (oooh yeah), black velvet coloring pages (which provide a sensory guide to help Leo stay in the lines), plastic scissors, activity pads, and a blank spiral notebook. I have been complimented on how well my children behave when we're out at restaurants -- when the truth is, they are often too busy playing with their My Busy Kits to be disruptive.

Do you have favorite gifts, guides, or advice for finding gifts for kids and people with autism? Leave a comment below.

Whether or not the parent was not legally sane at the time of the killing is not what interests me. She was coherent enough at one point to express her fear that the child would cost her too much, both emotionally and financially.

"Rochester told detectives that she thought having an autistic child would emotionally and financially “ruin” her life."

Let's take a look at some of the things she might have read before she made a decision to kill a six month old baby. While there may have been other reasons for the infanticide, including her state of mental health, the following examples could greatly add to her worries.

First, let's look at common "information" about autism that includes comparisons with deadly diseases (which autism is not), extremely inflated financial "information" that is not even close to the realm of reality (debunked by Joseph at Natural Variation, see below), and generally negative and alarmist views of autism. Autistic disability rights activists and our supporters have been decrying the use of these sorts of "devastating disorder" statistics and this sort of information for years.

I am not implying that any of the organizations or agencies I will list are in any way responsible for this particular crime, of course. I do suggest that these groups, which have the power to influence how people think about autism and other disabilities, take your role seriously and think about the message you are putting out and possible unintended consequences.

Autism Speaks has this to say (in fact, if I recall correctly, AS is the organization that came up with this "fact"):

"More children will be diagnosed with autism this year than with childhood cancer, juvenile diabetes or pediatric AIDS combined."

The Arc's first page on "I want to learn about Autism and Autism Spectrum Disorder" states, in its second paragraph, that it is estimated that one in 110 children is diagnosed with autism, "...making autism more common than childhood cancer, juvenile diabetes and pediatric AIDS combined."

Armed with all this "knowledge," one could easily be desperately afraid, whether or not one has any mental health condition. If mentally unhealthy, as this article suggests, these statistics running around in her head could have put her over the edge into doing something unthinkable.

It would be questionable on my part to assert that the abovementioned organizations have any direct responsibility for the actions of a single individual, however the almost ubiquitous repetition of fear- and anxiety-inducing statistics on the websites and other communications of large organizations amount to a kind of pernicious influence on both parents of Autistic children and the general public, and sometimes, unfortunately, on Autistics ourselves.

NOTE: I have made two changes since I first wrote this article two days ago. First, I removed one sentence. Some readers of my first version of this article pointed out that my sentence "Most parents won't kill their Autistic kids" does not take into consideration that prenatal testing could be used for selective abortion. I have decided that the prenatal testing issue, which is of importance, and the topic of this particular crime, should not be conflated so have removed that reference in the body of this post.

The second change I have made is to replace the word "murder," which has certain legal meanings, with the words "killing," and "homicide." I share the sense of moral outrage that many people have expressed about the smothering of a baby, and have made the change with some reservation, but it is not always correct to refer to a killing by a person who is legally insane as murder, so I will refrain from doing so in this article.

Wednesday, December 7, 2011

Up here in Canada, we had our Thanksgiving back in October, so we're all getting ready for Christmas/Hanukkah/other winter holidays. I'm going to be very honest: I celebrate Christmas, so my default for the holiday season is Christmas. This doesn't mean that stuff I say cannot be used for other holidays, it's just a religious difference, use as need.

But I'm kinda using my own experiences for this, so I'm going to resort to my default of Christmas. Also, I'm mainly addressing parents in this post, but I'm certain that some of these pointers can be used for Autistics of all ages.

But yes, the winter holiday season is approaching, and it's a very busy, hectic and overwhelming time of year, full of all the things that set off Autistics and other highly sensitive individuals. The season is full of parties, religious events, meeting a lot of people and having relatives all crowd together, malls full of shoppers and noisy music, and regular family festivities.

From my own experiences, there's nothing really new in terms of needs and challenges, just that the time of year makes everything more chaotic and intense. Add in the excitement for a countdown, the anxiety of a lot of surprises, plus a lot of the goodies that get passed around, and it's no wonder that things get overwhelming. The trick is to manage the new sources of over-stimulation and stress while still participating in the holiday so that everyone can enjoy.

Social
The holidays are filled with meeting people, lots of relatives, crowded house, parties, and other social complications that can make the basics, such as manners for receiving presents, more difficult to remember and perform.

Please keep in this in mind when interacting with others, that even if you know an autistic that is capable of being more polite, the overwhelming pressure on their social skills (and other skills) may mean that they are functioning on a lower level than their norm. It may be taxing for them to remember simple Please and Thank Yous.

Be mindful of this, and be patient. Little reminders on manners are okay, but don't be too insistent, because this is a very hard time of year and keeping the stress levels as low as possible all around is a good idea.

At events where its available, explain your and/or your child's needs, find a time-out corner for breaks, be mindful but try not to freak out at little slip ups, and if you find the stress becoming too high, leave early. Understanding friends and family won't mind too much, and you can get back to the ones who do. There might be some grumpy faces, but catching the stress at "grumpy" is better than "meltdown," where pretty much anything can set off a meltdown. So be very mindful of the warnings signs.

And if you think that so many events is too taxing, skip them. Take a break and pace yourselves. Friends and family members may not totally understand or be happy about it, but you're taking care of both your autistic child, and/or yourself. You could have a relaxing night at home, everyone doing a relaxing activity, maybe do something special if you think everyone can handle it.

I know that there are events that you can't skip, like certain religious events, or that mandatory company party. And to be honest, some of those are, well, boring for kids, and overwhelming in general, especially if it's formal (see sensory below). But don't be afraid to find a babysitter and go, even if it's for a little while so that you can fill the "I attended" requirements.

As for babysitters, it's good to give them some information about autism, so they know, but don't expect them to be professional respite workers. Look for someone who is friendly and flexible, and maybe have them meet the kids a few days in advance, if it's a new babysitter, so that everyone knows each other and you can see whether they get along. My parents tried to keep the same few babysitters, so even if there was an emergency, my brother and I would know the babysitter.

Also, parents, don't be afraid to take the time to go off by yourselves and have a night together. Everyone needs a break every once in a while during the holidays.

Sensory

You probably could name quite a few sensory issues we Autistics have this time of year, as every thing becomes more intense, and we tend to react more because of that. I'm talking the crowds in mall, the rushing here and there, all the loud music and holiday jingles, strange and new foods, smells and textures, and winter clothes.

Again, a lot of it is the same issues each of us have, just more intense during the holiday season. As a result, it may be better to plan shopping trips for times when it's not so busy, or if that's not possible, to shorten the trips as to accommodate a lowered tolerance limit. It'll probably mean more trips, but it might also reduce overload.

Another sensory issue is foods, and there are many strange things to eat, with rather strange names. Don't worry about having your autistic test new foods; while it's certainly an opportunity to try new things, it may be more that they can handle during the holidays. If they consent to try a bite of something you think they might like, awesome. But be okay if they decide not to try it right now.

As for music, if you want to have it on, keep the volume down. If there's people over, well, you might want to just turn it off, because it becomes another source of noise.

The final issue I can think of for sensory is clothes. For me at least, this is big challenge during the winter months. I find that during winter, there's less moisture in the air, and so my skin becomes dry and more sensitive. This means even more sensitive to the feel of cloth, textures, and seams, especially after bathing when water has dehydrated my skin. Even sensory-soothing clothing can become irritants during this time of year.

To counter-act difficulties dressing due to this, I suggest bathing well in advance of events to give the skin time to hydrate and produce its own oils.

Also, in winter, fabrics are heavier, which is good for those who need more sensory input, but clothing contains more seams and restrictions of movement. Given the time of year, some articles of clothing are necessary to wear outside. So try to use the hat, mitts, scarves and other winter gear that your child seems able to wear the longest, but when possible, limit the amount of time they need to be wearing their gear.

As for the times where formal wear is required, it becomes a matter of how much your autistic can tolerate. Try to buy formal wear that can be worn for long periods of time, or else bring along a spare set of clothes, just in case. Otherwise, let your child wear what's comfortable and looks good.

Schedule

Another source of distress during the holidays is the deviancy from our regular schedules. Understandably, there's a lot of things to keep track of, and it can get very busy and overwhelming. What I think is key is keeping as much of the regular schedule, with more cool-down periods. The normalcy of it will be grounding and calming, reassuring your autistic that things are still under control, and it helps transitioning between the holiday season and the non-holiday season.

For all the different events and activities, if possible and when appropriate, try to include your autistic in the decision making process. This will help them to be involved and be more informed about what's happening. This also gives them the opportunity to express what they'd like to do and experience the holiday better.

I also suggest to try to do the same things year after year; this makes the holiday a part of the yearly schedule, and as time goes on, may make the holidays easier as your autistic has a better idea of what to expect.

What I find is that after the holidays, or any big and draining events, I have a period of transition and adjustment to get back into the regular schedule. Sometimes this includes period where I regress in skills, tolerance, and energy as I am recovering from the event, especially when I have been unable to maintain my regular schedule and practice skills.

During this recovery period, be patient and mindful that your autistic may be drained from the holiday, get back into the regular schedule as soon as possible, and allow them to have more quiet time periods. For me, to recover from a weekend usually takes about a week, but it's different for everyone.

As well as what I have above, I asked my mother for some tips and advice on handling the holidays. After all, she did raise myself and my brother, both of us with a wide range of difficulties for this time of year. So, from my mother:

Don't do too much on any one day; usually one event per day is enough.

Each morning, share that day's schedule with the kids, and only that day's schedule. Don't overwhelm them with future days and activities; stay day by day. Also have it that the kid can carry it along and refer to it.

Keep clothes soft and comfortable.

Have quiet time, and let them know that it's quiet time, so that they can relax properly.

For children who have a hard time staying at the table, have a candle on the table. Makes meal times more special, and keep their attention so they don't leave. Keep a plate under the table, and watch for fingers that start playing with wax. (Candles are a two-edged sword; can keep kid at table, but they may want to play with the melted wax)

Always serve some of the kid's favourite foods at every meal, so that if they don't like the big meal they at least have something to eat.

Make sure that relatives and guests know the kid's needs.

Limit the amount of people coming over and in the house at any given time.

Have a safe place for your kid to withdraw.

If you have a large family gathering, rent a hall. But make sure to keep a safe corner.

Don't force the kid to do greetings and farewells; it's too much commotion in the front hall.

Allow your kid to choose toys to hide away that they do not have to share, but at the same time, have your kid pick toys that they do have to share with other children.

If playing music in the background, have calm music and be careful of the volume.

When opening gifts, clean up the boxes and wrappers as you go, so that it's not too chaotic. After opening, take gifts to each person's respected places to keep the central space calm.

If the kid like puzzles, create a puzzle corner where they can interact with others one-on-one as they work on a puzzle.

Find some way that the child can contribute and make the holiday their own. Give them suggestions and work together on whatever the child chooses, such as help decorate, help making food, setting the table, putting stamps on and licking shut Christmas card envelops, etc.

If you have any questions about this list, or you think I've missed something, feel free to ask and comment.

Monday, December 5, 2011

There is so much misinformation and so many misperceptions out there about people with disabilities, and that includes autism. I’ve read some things lately, comments by teachers or people who will teach, that have sent me reeling. In typical Lydia fashion, I will write a Ten Things in an attempt to dispel these myths about people like me.

1. People with disabilities are not always happy, joyful, eternally childlike, or “perfect angels.” People with disabilities are humans.

This means that we experience the full range of human emotion, including the uncomfortable ones, such as anger and sadness. Some of us are generally happy, just like some people without disabilities are generally happy, but others of us are confused, angry, hateful, manipulative, and so on. Autistic children display inappropriate and unwanted behavior just like typical children do.

2. Always assume we understand everything you’re saying when we’re in your presence, if nothing else, just in case we actually do.

I’ve heard teachers and parents talk together about a child like the child isn’t even there. Not cool. Especially with autism, some children understand everything you say but have no means of expression. Many children have been labeled with ID and are, in fact, brilliant. For years, parents and teachers talked like the child wasn’t there … when he was entirely there. He was hurt. And, unlike a typical child, he has no way to express that hurt.

3. Do everything you can to treat us age appropriately.

I look and act younger than my nearly-24 years, but I like to be treated like the intelligent and sentient being that I am. If you think you need to use baby talk to reach a child … try music, dance, art, sign, PECS, sports, typing … and so on.

4. Please reduce noise … and not just auditory noise.

There is visual noise, smell noise, thought noise, and tactile noise. If your room has fluorescent lights, use the blue light covers available on Amazon. Cover busy carpets. Tile floors reflect light which makes them hard to walk on. Everyday school materials (Sharpie, glue, paints) can lead to intense reactions for people with autism. Never ask more than one question at a time. This causes thoughts to build up and collide without ever making it out of my mouth. Finally, offer a sensory corner that is dark and quiet, where a child can rock in a chair, lay in a beanbag or under a weighted blanket, or spin.

5. Offer as many means to communication as you can think of!

Verbal communication is not enough. For me, the ticket is typing. For other children, it may be art, or athletics, or PECS, or Sign Language, or movement, or a certain kind of music, or design, or building … You may find that you can connect with a child via his preferred method of expression. I should note here that Facilitated Communication, or FC, is a perfectly viable option for some people. There have been times that I have become dysregulated to the point that I could not type, and tactile input from someone would have made it possible for me to communicate. It can be done wrong, but when done right, it can open doors.

Rather than describing children as, “Jimmy, the low-functioning autistic child,” try describing the child as, “Jimmy, an autistic boy (or a boy with autism, whichever you prefer) who has poor expressive but great receptive communication, likes to spin, and is obsessed with dogs.”

8. Routine, routine, routine.

If you lived in a world as confusing as ours can be, you would want as many things to be as predictable as possible. If something like … opening meeting is always the same at school, and then it changed one day, it would be like you missing your morning cup of coffee, driving a different car on a different route, parking in a different spot, and teaching in a different classroom. You’d be upset, too! And the child who has little to no means of communication has no way to say, “Hey, not cool, and I’m really frustrated,” like you would. They have only their behavior to use. Visual schedules are huge for ASD kids. I even have them around my apartment, not with pictures but with words.

9. Be careful how much you expect from a child who is not using is “first language.”

As I said, I type. But you can’t expect the same degree of intelligence and insight to show through when I speak. Imagine if you had to spend your whole life writing with your nondominant hand. Well, for me, speaking is like doing just that. Be patient. We can learn and we can improve, but we need your belief in us and your patience.

10. Praise us when we’ve earned your praise, but not for every little move we make, or it becomes meaningless.

Build on our strengths as you work on our weaknesses. We are proud of ourselves when we succeed, so help us to see what we can do and become! Teach us to dream!

Friday, December 2, 2011

I have this image in my head whenever anyone says "learning." Learning means a teacher standing in front of students, who are sitting at desks, listening quietly to the teacher talk facts, figures, and concepts. Anytime I say "learning," I think "academics," by which I mean "readin', writin', and 'rithmatic." 'Cause I'm a product of that kind of learning. From elementary to college to law school, learning was sitting in a room with a large group of people and memorizing. Jeez, the number of things I've memorized, the number of meaningless mnemonics.

That's why I think that the only way a child learns is from school, from an adult telling them facts. But that means a child is incapable of discovering something on his own. That he can't explore and figure things out without an adult telling him to do so or telling him what it means. Do I think children are slow? Or completely incurious? I must think that adults are the only source of knowledge, that we download to kids like they're empty iPads without apps.

Or is it more personal? Do I think it's my child's problem? That because of his challenges, he is incapable of learning without a lot of prodding, pushing, repeating and repeating? I don't think I could take much of that kind of "learning." Is my opinion that low about my son's abilities, his curiosity? I must think that what schools say is important about the world, development, and success in life is really the right answer, the only answer. What if it isn't?

My child doesn't learn best from adults talking at him. He learns from the world. If he asked you, "what noise does a deer make," what would you say? I told him that a deer doesn't make a noise. But Jack discovered that they do make noises, breathy, huffing snirks and snorts. He learned deer from deer -- what they smell like, look like, feel like, what their poo looks like, what they eat -- from his own experience, not from me. By going out in the world and touching, feeling, holding, watching, listening.

And he doesn't do a whole lot of learning sitting still and listening. He's a physical objects kinda guy. The minute we finish reading a book, he's up to get a three-dimensional version of what we were reading about. He wants to build it, make it move, move around in it. He goes from 2-D to 3-D and that's how he learns, really absorbs the idea and makes it his own. We've built a cemetery, gift shop, ancient Egypt, the Wild West, the White House, and a bird house.

Adults are not the keepers of knowledge. I need to get out of my child's way and let him learn -- in his own way, his own time, his own interests.

I'm still figuring out how to support him as he learns -- like not correcting his every mistake. As if he can't learn if I don't tell him everything he's doing wrong. He really needs a safe place to make mistakes and make lots of them. Every time he says, "The General is a gas engine," and I say, "For real, it's a steam engine." he sighs at me. Can't I just let it go? He knows. Or he'll figure it out. Let him play around with ideas.

I also have to stop myself from asking teacher questions. 'Cause Jack already knows how to combat that. Anytime anyone asks him, "Do you know what blank means?," he says, "No." Even when he knows. Especially when he knows. 'Cause he's not playing that game. He's not here to show you what he knows or to be taught anything. He wants to learn it his way.

Besides, the things that have stuck with me the most from my education are not the whats, the memorized things, but the how -- how to learn. How to question, analyze, think critically, hunt down the sources, consider two sides, find more than one answer. To be persistent, objective, consistent. To discover my own biases. To be open to new ideas. To use my strengths and figure out alternatives for my weaknesses. To be curious. To find the things that empassion me, that make me want to keep reading about them, keep investigating, keep learning.

Kinda like being a reporter. With a tweed hat. Or an adventurer. With fur boots.

The passion, the curiosity, the how of learning -- those aren't confined to school. They don't come from memorizing. They merely need the chance to flourish, in a safe environment without fear or pressure, from people who open up the world and say, Wow, will you look at that.

That's it. Exactly. Not the schools, the degrees, the prestigious jobs. If I can stop being afraid of what he's not learning, of what other kids are studying, of what schools they're getting into, what colleges. If I can keep the "wow, will you look at that" spark in him, the passion, curiosity, openness that makes him want to keep finding out things.

That's what I need to remember. Learning is not a teacher lecturing. Learning is not who got into the best school. Learning is a kid saying, Wow, will you look at that.

That's not gonna stop me from the twinges every once in a while. I'll hear about a friend's child and my mind will scuttle to the dark corners. My child's not doing that, it will whisper. My child's not in school, not at grade level, not writing, not reading yet, not reading yet, not reading yet.

And I will have to sit my mind down in a chair and repeat firmly, "Learning is not who got into the best school, who gets the best grades, or the second- or third-best. Learning does not have a grade-level."

And then I will lean down and whisper, "Learning is here with you now. Learning is following what he loves."

Wednesday, November 30, 2011

At the Adult Services Subcommittee's final meeting in late July, much to do was made about semantic disagreements -- "ASD individual" versus "individual with ASD," and of course, the dreaded "person with autism" or "person who has autism" versus "autistic person." These issues of semantics are hot button issues, and rightfully so.

Words and language are powerful tools by which an individual can express ideas, whether abstract, actionable, or concrete. As a writer and editor, I know firsthand that language and the meanings we attach to words very much impact, influence, develop, and change the attitudes that we have toward the subjects of discussion. That is why people are easily insulted or upset by word choices. Changing a phrase -- even if it holds the same literal meaning -- alters the subtle connotations and nuances of the speech, and communicates a different meaning and context than the original phrasing.

In the autism community, many self-advocates and their allies prefer terminology such as "Autistic," "Autistic person," or "Autistic individual" because we understand autism as an inherent part of an individual's identity -- the same way one refers to "Muslims," "African-Americans," "Lesbian/Gay/Bisexual/Transgender/Queer," "Chinese," "gifted," "athletic," or "Jewish." On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as "person with autism," "people with autism," or "individual with ASD" because they do not consider autism to be part of an individual's identity and do not want their children to be identified or referred to as "Autistic." They want "person-first language," that puts "person" before any identifier such as "autism," in order to emphasize the humanity of their children.

Yet, while I have been familiar with this rift among the autism community over the use of "person with autism" as opposed to "Autistic person," I hadn't fully explored the diversity of perspectives on the topic until now.

During last Wednesday's meeting, one subcommittee member, who I believe is the parent of an Autistic child, and an Autistic self-advocate expressed disagreement over the terms. Feedback from one of our members suggested changing "ASD individual" in our report to "individual with ASD." The Autistic self-advocate sitting beside me, who also has an Autistic brother, voiced her objection to use of the term. "I disagree," she said as the suggestion was read aloud. "I'm not a person with autism; I am Autistic."

Immediately, a mother sitting next to her responded, "I come from a time where that word, 'autistic,' had -- still has -- a negative meaning. It's offensive. When someone refers to my son as 'the autistic,' I cringe at that word; I get ready to defend him."

After our meeting, I took the time to explore a wealth of opinions online about the use of person-first language -- from those who support it and those who oppose it. The theory behind person-first language is that it puts the person before the disability or the condition, and emphasizes the value and worth of the individual by recognizing them as a person instead of a condition. And that's a great idea. In fact, when discussing specific people, I have never once heard anyone -- self-advocate, parent, teacher, or otherwise -- refer to a person as anything except by his or her name. I can't think of any teacher -- at least any decent one -- who would refer to a student as "that Autistic kid," or "that kid with autism." And I certainly can't think of any parent who wouldn't refer to his or her child by name.

But why are we self-advocates so opposed to this terminology? Aren't we all about de-emphasizing and correcting inaccurate, misleading, and harmful stereotypes and attitudes? Right? From that other perspective, you would think we would support the use of person-first language, because we want to be seen as people with equal rights, value, and worth to non-Autistic people. But we don't. Because when people say "person with autism," it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn't true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.

One argument I encountered in one of the more cogently-written papers in favor of person-first language expostulates that because cancer patients are referred to as "people with cancer" or "people who have cancer," as opposed to "cancerous people," the same principle should be used with autism. There are some fundamental flaws with this analogy, however.

Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person's identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive.

Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person's identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.

What I found most interesting in reading this selection of articles and blog posts is that many of the same arguments are used for both positions, but with separate sides, naturally, coming to very divergent and contradictory conclusions.

Firstly, I saw in at least two articles in favor of using "person with autism" that the authors strongly oppose language referring to disabilities like "suffers from," (i.e. "Alan suffers from Asperger's syndrome;" "Joey, an autism sufferer;" etc.) which has traditionally been a talking point of self-advocates as well. I do understand that not everyone who supports the use of terminology "person with autism" would disagree with language like "suffers from," but it is still interesting that there are those who do. It suggests a fundamental shared value -- that people with different neurological conditions are not "suffering" because of their difference or disability.

Secondly, as alluded earlier, those on both sides want to emphasize the value and worth of the person. Person-first language advocates believe the best way to do this is through literally putting the noun identifying "person" before any other identifiers. (As noted in one of the other articles opposing person-first language, however, English is a language that puts adjectives before nouns, whereas there are multiple languages that always place adjectives after nouns. In Spanish, for example, "person with autism" is "persona con autismo," while "Autistic person" becomes "persona autística." In both cases, autism/Autistic follows the noun.) Person-first language opponents believe the best way to do this is by recognizing and edifying the person's identity as an Autistic person as opposed to shunting an essential part of the person's identity to the side in favor of political correctness.

It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as "a person with autism," or "an individual with ASD" demeans who I am because it denies who I am.

Lastly, what is most interesting indeed is the shared expressed sentiments that using or not using person-first language is necessary to change and shift societal attitudes toward Autistic people. Returning to the premise of this article, this is the sole reason why this debate continues to be argued and why many people on both sides regularly emerge upset and feel personally attacked. Language does play a large role in shaping societal attitudes.

But let's think about what we are doing when we use these terms. When we say "person with autism," we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word "with" or "has." Ultimately, what we are saying when we say "person with autism" is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual's identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

Yet, when we say "Autistic person," we recognize, affirm, and validate an individual's identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person -- that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual's potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people -- and that that's not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

That's why, when I read a few articles scoffing entirely at the debate, and dismissing it as ultimately irrelevant (insisting that each person should use the terminology he or she prefers and to ignore what other people say or write), I was concerned. The question of person-first language is definitely important and cannot be disregarded. The way we use language affects those around us -- in our immediate communities and in society at large. Trends of language have the power to transform ideas and attitudes. To dismiss this as "a silly semantics argument" denies the power of language.

What does, however, disturb me is the vitriol during debates about this (and similar) topics in the autism community. While it is, as repeatedly emphasized, an important debate with huge ramifications both short-term and long-term, hurling ad hominem insults, making baseless accusations, and shouting over tables (or computer screens) at the people on the other side ultimately demeans both you and them. It shows great immaturity, inability to civilly and peaceably discuss important topics, and insensitivity to the personal experiences vested in each of us with a stake in this debate. Having strong opinions on a topic and being able to have a respectful discussion with someone else are not mutually exclusive.

So what can we do moving forward? Or, more importantly, what should we do? To those of you who use "person with autism," I will always respect your Constitutional right to express yourself however you like, but I urge you to reconsider the consequences of using such language. To those of you who use "Autistic person," I urge you to consistently use such phrasing everywhere possible, whenever discussing autism and issues that affect Autistic people, and to develop coherent, rational explanations for why you prefer this terminology, so that you can engage in such mutually respectful and civil exchanges with others.

That, actually, goes for everyone. If we ever want to accomplish anything as a community, as a movement, or as advocates, we cannot allow ourselves to be constantly divided by infighting and vicious bullying -- and yes, that occurs from all sides of these debates, not just one. It is imperative that we learn to engage critically and respectfully with one another, and to value each individual's voice and feelings as equally important. Otherwise, we'll become even more dysfunctional than my subcommittee has been in recent months.

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Interested in other perspectives? Here are some links to feed your curiosity.

(A note: I believe fully in the freedom of expression and belief, and do not believe in censorship of people with whom I disagree. Thus, I have no policy about excluding or ignoring any particular individual, organization, or idea when linking offsite. Links offsite are not to be construed as endorsement or acceptance of the ideas and opinions expressed therein. [Emphasis added -Eds])